Intersistial Cystitis (or bladder pain syndrome)

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New Member

Date Joined Mar 2010
Total Posts : 4
   Posted 6/24/2010 11:05 AM (GMT -6)   
I have not been diagnosed with Fibro, but ruling out other diseases.  I have been diagnosed with Intersistial Cystitis.  Is this another disease that relates with Fibro?  Does anyone else have this disease? 
I also find that heat bothers this normal for fibro?  But I was in a humid area for vacation and was in a cooled house most of the time I didn't hurt at all while I was there and then came back home where  my air is dry and the next day started hurting.  Does humidity help?
I would love to be able to have a diagnosis, not knowing what is wrong, but knowing something is wrong is hard to deal with.
Everyone have a great day!

Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1371
   Posted 6/24/2010 1:02 PM (GMT -6)   
Hi Stephsmom, and welcome to the family. Just sorry pain brings you here.
I just looked up IC on the Mayo Clinic site and they said IC can happen to ppl dx w/ Fibro or other pain issues.
I have a lot of urinary issues but I haven't been dx w/ IC.
I have a problem w/ heat, humidity, dampness, cold, windy, rainy, etc. I don't do well in extremes. I like it 'just right'.
It is hard not knowing what is going on, but the drs run the many tests to be sure b/c FMS has many like qualities w/ other illnesses.
I hope you get an answer soon, then you can start a plan of action.
Hope you have a very good day, and again, Welcome!!
God bless.  Alice. 

Regular Member

Date Joined Mar 2010
Total Posts : 90
   Posted 6/26/2010 7:47 PM (GMT -6)   
Hi Stephs mom - I am a Fibro sufferer that first suffered with Severe IC for many years before being diagnosed with Fibro.  My IC continued to get worse and then after a few surgeries and sickness, it seemed to spread to my whole body and got worse - hence the fibro.  Now they both bother me probably equally.
Humidity does seem to bother my allergies and joints, and cooler air is better for my body - but heating pads - or especially damp heat, is good for my fibro soreness in the morning and evening.
I'm sorry you have these diseases but it is good to see someone on here that also has the related condition....a few of my doctors seem to think a lot of my conditions are related - possibly autoimmune so who knows.
Hope you are feeling well and feel free to ask any questions!

Regular Member

Date Joined Jul 2006
Total Posts : 380
   Posted 6/27/2010 8:00 AM (GMT -6)   
I have had bladder issues all my life. I was diagnosed with IC as an adult. I also have a few other problems that go along with fibro. (thyroid, celiac, osteopenia, my issues with always being tired seems to be becoming on more and more lately.)

I really feel sorry for anyone with IC. Sometimes when I was having horrible issues with the IC, it was as bad as labor pains. I would have to spend nearly all night on the toilet just incase there was some flow.............thankfully those issues seem to be undercontrol for now. It comes in cycles. There is a diet you can go on for IC avoid spicey hot foods, vinegar, mustard and black pepper for a while. Once I would get things under control again, I could add the foods back into my diet. Thankfully since going gluten free, I do not have the IC as often as before.)

Regular Member

Date Joined Mar 2010
Total Posts : 90
   Posted 6/27/2010 10:26 AM (GMT -6)   

It's nice to meet another IC friend (as sad as that is to say). Having that chronic pain condition for so long was one of the harder ones to explain to people....well aside from vulvodynia and vulvar vestibulitis because how do you really explain that, haha. But people never understood how debilitating it can really be. I suffer a lot of pain with mine and am up so much as you said going to the bathroom that a full night's sleep is never in the books for me (luckily I've been able to actually get back to sleep lately due to the Savella/Celexa mix I'm on).

I'm so encouraged to hear you say that you've got it somewhat controlled. I feel sometimes my flares come together and sometimes its one or the other. The prelief has helped me be able to add things back in - but I've been told (and wanting) to go gluten free to see if it helps so that's a good suggestion.

Sometimes I feel like IC is just way down on the list as far as chronic pain diseases go and a lot of the time its worse than my fibro but there aren't a million commercials or books about it. And a alot of people have had a UTI, so trying to explain it as constant either folks just can't comprehend that, don't want to, or think they could deal. It can be frustrating, but I do feel for everyone who is already in pain and then having to deal with IC. I was lucky enough to have a Urologist who just realized it was way beyond IC at the point it moved everywhere, but it did start there. Good luck to you all and you're in my thoughts ;)

Regular Member

Date Joined Jul 2006
Total Posts : 380
   Posted 6/28/2010 12:07 AM (GMT -6)   
Pennstate, there is so much that I have gone through with this in my marriage, I thank the Lord for such a loving and understanding husband. He has had to suffer with me as well!

Since I had the last bladder tack.........actually the urologist used a piece of tissue from pig and tapped one end into my pelvic bone, lifted the bladder and tacked in the other end to my pelvic bone, I have been so much better with the IC symptoms! I thank the Lord for a very good urologist also!

When we were stationed in Spain, I had to go to the ER (nearly every weekend) for a while with sudden onset IC problems and needed meds for relief. The urologist that was stationed there at the time called me in for an appt. Since the infections were SO SLIGHT.... he thought that I needed to talk with a psychiatrist because it had to be 'mental'. I went home crying. No one if they saw me sitting with chills and the 'contration' feelings would say it was not real. My hubby knew it was real. Thankfully I avoided the Urologist and would see a dr. that was a member of our homeschool group. He gave me medication in sufficient supply that I treated myself when the onset would start. I had pyridium (turns your water orange) and nitrofuriton for the infection. I took 1 nitrofuriton daily for about 6 months.

Then after I got a kidney stone and had to see the urologist, I was crying in the ER..........I did not want to see that man again!!! PTL we had just gotten a new urologist and the old one was leaving that week. Dr. Berloit was a GODSEND! I ended up having to have surgery and while I was in the surgery, he blew up my bladder with air and said it looked like a collindar with all of the microscopic pin holes.

He said, no wonder your infections always seemed so small, your infections were in the wall of the bladder. He was so understanding and with his help I went into a 'remission' for a while.

When the bladder had dropped and I needed teh 2nd tack, I had started having the IC again. (Some of the 'contractions' were so strong it would make my bowels run at the same time without any control. My new urologist here in the states said that the same nerve controls both the bladder and the bowels so it made complete sense and NO I was not losing my mind that the 2 were tied together. LOL)

I know this may be TMI but maybe it will help someone that is suffering or someone to understand a loved one that is going through this.

I NEVER EVER drink caffeine tea. That will trigger an onset of IC within a day. I can drink caffeine in cokes and coffee, but it will never work with caffeine tea.

I did go through a time of wearing a patch for my IC problems of leaking and burning. I got to where I gag at the idea of taking a pyridium. I had to switch to the blue water changing pill. Urostat.

I always hate to say I have been pain free of IC because that always seems to coincide with another outbreak, but thanking I am managing my IC at this time.

I hope you get some relief. If you ever need to know where all of the bathrooms are located between Alabama and SC, I can point you to the good pit stop areas. LOL

Veteran Member

Date Joined Sep 2006
Total Posts : 1713
   Posted 6/28/2010 8:44 AM (GMT -6)   
I ended up with IC when I was in my early thirties. I had symptoms for a year or so and was on antibiotics for that long. It hurt like crazy and I was always going to the bathroom. The hardest part that I remember was wondering if it would ever go away. It finally did after about a year.

Hang in there ladies, and know that I am praying for each of you.

Co-Moderator Chronic Pain and Fibromyalgia Forums
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.

Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 6/28/2010 9:13 AM (GMT -6)   
Hi Stephsmom,

My OB/GYN has diagnosed me as "probable" for IC/PBS (in fact, I didn't even list it in my signature below since he's not really certain). I have the urgency and frequency issues, along with pain as my bladder fills. My doctor suspects that more of my pain is coming from scar tissue (adhesions) on my bladder, so as the bladder gets bigger when it fills, the adhesions get stretched and cause the pain.

Currently I'm not doing any kind of treatment for it - I'm on enough pills right now for everything else I have going on and I just don't have the energy to go get the tests done, etc. In fact, as sad as it sounds, I'd rather just ignore this and hope it goes away instead of doing anything - it's just too much to add something else on the "what's wrong with Pam" pile.

I hope you're able to get some answers about IC and that a treatment plan can be implemented for you quickly. I know how painful it can be, and for your sake, I hope it doesn't get that bad. Take care of yourself and know you're in my thoughts and prayers!

Pam smilewinkgrin
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily

Regular Member

Date Joined Jul 2006
Total Posts : 380
   Posted 6/29/2010 3:16 AM (GMT -6)   
Pam, have you thought of adding a cranberry pill into your vitamins? Cranberry pills help to create an acid/ph barrier so that you do not get infections so easily.

For the test, a urologist would knock you out (if they are merciful) and blow the bladder up with air to take a microscopic look see. For the adhesions, I would think that would be a laproscopic procedure to look on the outside of your bladder, intestines and female organs to look for adhesions.

To any even just reading and not posting to this, you have my deepest sympathy and hope that you will seek out a good urologist to give you a plan of action to get into remission.
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